Tag: Tourette’s Syndrome

Tourette’s make people tic, not tick.
Tics are involuntary movements, sounds, words or sentences. Ticks are insects which carry diseases.

Tics are, generally speaking, not indicative of what the person with Tourette’s is thinking.
Tics are random. So, someone with Tourette’s tics “wanker” in your general direction, don’t take it personally.

Tics are like the moon. They wax and wane.
People with Tourette’s will go through periods of time where their tics are not very noticeable, and periods of time where they are very noticeable.

Tourette’s normally starts in childhood.The usual age for Tourette’s to kick in is 6 or 7. (I first started ticcing age 21, which isn’t the norm.)

Tourette’s is not a mental illness.It’s a neurological one.

Most people with Tourette’s Syndrome have something else too.Common comorbidities are OCD, ADHD and autism, but people with Tourette’s often have depression and anxiety too. All this means that when you have Tourette’s, tics can often be the least of your problems.

Most people with Tourette’s do not swear.According to one study, only 10 to 15 percent do.

Tourette’s is incurable.
Although there is medication and therapy which can help people manage their tics better, as a general rule, tics don’t ever just go away.

About 300,000 people in the UK are diagnosed of Tourette’s.Meaning that it’s not that common, not that rare.

Tourette’s does not affect intelligence.
So, if you see someone with Tourette’s, there’s no need to patronise them. (This happens a lot.)

I go to the supermarket and everybody looks at me. I get on the Tube and everybody looks at me. I get off the Tube and everybody looks at me. Everybody looks at me.

This might be because everybody thinks I’m supremely beautiful. However, it’s more probable that everybody is wondering what the hell I’m doing. When I’m out and about, I talk to myself, swear to myself, and hit myself. I click my tongue, smack my lips, blow kisses, and shout out the most random words (the Roman Emperor Caligula got a high-volume mention yesterday).

It’s no wonder people stare. Tourette’s is an odd thing, and people like to stare at odd things. Unfortunately for me, my tics are often at their oddest and loudest in public. Also unfortunately for me, a lot of people don’t get what Tourette’s is. This means that I can be slapping my face or cursing at a chicken salad and many people will assume that I am doing this voluntarily. However, all my tics are things I do not want to do. They are automatic, involuntary, meaningless.

Although staring might also be automatic and involuntary, staring at someone certainly isn’t meaningless. Staring at someone is telling them that they look odd, that they are behaving differently, that they are an anomaly.

Being an anomaly at the centre of attention can be a pretty embarrassing place to be. It certainly was at the start of my Tourette’s. By now though, I’m so used to saying all manner of weird things in front of large crowds that I’m pretty used to the unwanted attention. Happily, soon after developing Tourette’s, I came to accept the stares by either a) ignoring them (you can get used to anything), b) staring back (this makes people fantastically uncomfortable), or c) saying hi to anyone who is staring (this one really freaks people out).

It also helps me to see the big picture. I live in London, a city of a gazillion odd people, me included. Every day, we all walk past anomalies like me talking to themselves, swearing to themselves, and hitting themselves. We turn to them, we look at them, and we stare at them. Then what we do is look away, forget that they ever existed and move on with our lives.

At the end of the day, it doesn’t really matter if you shout “Caligula!” when you cross the road. In this city of nearly nine million people, everybody might be looking at me, but everybody is just a little bit too busy to care.

Social dexterity.Sometimes, Tourette’s is going to land you in the soup. You’re going to shout something mean in the vague direction of someone who doesn’t want to be called something mean. You’re going to make noise in places where it’s frowned upon to make noise. You’re going to accidentally tear down a load of decorations.
In these situations, it’s important to know when it’s appropriate to explain your condition and how exactly to do so. This is very tricky.

The ability to leg it at any given moment.Even if you have explained why you’ve done what you’ve done in painstaking detail, even if you have used the words “can’t help it”, “condition”, “neurological” over and over again, there will be some people who are pissed off that you a) have just told them to piss off, b) just broken their prized possession, or c) just interrupted their production of Hamlet with a grammatically unsound sentence chockfull of surprisingly creative expletives.
In these instances, run.

The ability to chill out.Other people’s attitudes towards Tourette’s can be very annoying. Some people do not understand why people with the condition cannot just shut up. Some people dismiss the condition as literally not existing. Some just treat the condition as a punchline.
All these attitudes can and will be angering. However, rage is very energy-consuming. It’s therefore important to realise that you cannot change everyone else’s opinion, and that what other people think is beyond your control. In other words, it’s important to chill out.

A propensity towards not being embarrassed even in objectively embarrassing situations.For most people, blowing strangers kisses, shouting out “tit” in the middle of the street, and telling cashiers that they’re twats is mortifying. It’s helpful to get over this embarrassment quickly, as it’s inadvisable to live life constantly blushing.

Flatmates and neighbours unperturbed by random eruptions of sound.Whenever it’s late and perfectly silent, my Tourette’s invariably decides to shout. Right outside their rooms, too. Right outside where they are sleeping.

Good friends.Having Tourette’s is an excellent filtering process. People who can’t handle you having the condition would most probably be bad friends. People who couldn’t care less about you having the conditions would most probably be good friends. Life with Tourette’s can be a little tricky, so it is important to have people with whom you can laugh about it all.

Decent employers.I once blew in face the face of my boss, and he was surprisingly chilled out about it. If only that all employers were so understanding. Once, a potential employer told me they didn’t know if I could work with them because of the “duty of care” they had to the customers. That employer was a fool.
Some people with Tourette’s might need “reasonable adjustments”. For instance, they might need extra breaks so they can tic at will, or to have their desk in a quiet corner of the office. If your boss has no problem with this, then they might be a decent employer. If your boss has a problem with this, then you might not want that job anyway.

A sense of humouris twice as important as anything else. Again, for obvious reasons. If you didn’t laugh, you’d cry.

One of the hardest things about having Tourette’s is knowing when to tell people I have it.

Occasionally, it’s obvious that I need to explain, like that time a Tesco security man asked me why on earth I decided to kick his lovely wall at two in the morning. “I have Tourette’s,” I say. “I do things without meaning to.” Upon receipt of his blank stare, I explain further. “It’s a neurological thing. A condition. I can’t help it.” But, as blankness continues to emanate from him, I do what I normally do in these situations, which is walk away at an incredibly brisk pace.

Most of the time, though, it’s just really hard to know who to tell. Do I tell the people on the tube, to whom I have just sworn at very loudly? Do I tell the lady passing me in the street, the lady who let out a sarcastic “charming!” after I let out an involuntary “fuck!”? Do I tell the waiter serving me why I have just meowed very convincingly – so convincingly that I overhear his colleague asking him if there’s a cat somewhere?

The problem is, whenever I do tell people I have Tourette’s, the conversation doesn’t always go too well. Sometimes, the stereotypes surrounding Tourette’s prevent people from understanding exactly what I mean. Once, my Tourette’s was making arms and legs shake. “Are you cold?” an acquaintance asks. “No, I have Tourette’s,” I say. She didn’t respond, probably because my explanation must have seemed like a total non sequitur. Most people associate Tourette’s with saying random stuff, not doing random stuff.

Currently, I am doing some bar work meaning I interact with hundreds of new people every week, only about three of whom I have explained my Tourette’s to. The bar is loud, which masks most of my vocal tics. The motor tics can be interesting though. I often jerk my head to ceiling as I am pouring a pint, meaning that the glass overflows and some customers get as much beer as is humanly possible. This is a plus for the customers of course. It’s value for money. However, if I were to explain to everyone who received a very generous glass-full why they have received a very generous glass-full, it would get pretty boring pretty quickly, and ultimately be of little to no interest to people who just really want their beer, and not a long conversation about the vagaries of my basal ganglia.

Doing the BBC short video, “Things Not To Say To People With Tourette’s” has helped a bit. I was only diagnosed one-and-a-half years ago, meaning that people like cousins, aunts, and friends overseas who have never needed to know about my Tourette’s now know about my Tourette’s.

However, every day, I tic in front of people who decide to stare at me afterwards. It’s impractical to tell them all that I have Tourette’s, so I don’t. But I know that I should be telling some of them why I do what I do. If only there were a simple way to figure out who they are…

A few weeks ago, I participated in the BBC3 short video “Things Not To Say to People With Tourette’s”. The whole series is excellent. Other episodes deal similarly well with other misunderstood conditions such as dyslexia, bipolar disorder, and schizophrenia. Taking part was an excellent opportunity to debunk some common misconceptions about the condition (i.e. that people with Tourette’s swear all the time), but also to meet someone else with the condition (I’ve only met one other person with Tourette’s before). Please do check out the video, and the other ones in the series too.

There are so many positive aspects to having Tourette’s, it’s hard to know where to begin. But I think I’ll start where I am usually: the centre of attention. Every day, and wherever I go, I turn heads. Whether it’s because I’ve just called a stranger a wanker or whether it’s because I can’t stop smashing my head against a wall, Tourette’s comes up with all sorts of creative ways to make me the centre of attention. Every day, I get stared at, laughed at and frowned at, and I just love it.

If being the centre of attention is the best thing about Tourette’s, then a close second has to be the comedy. To be honest, my Tourette’s is funnier than I am, and that’s quite an achievement, because I am hilarious. Sometimes, all I have to do is tell people I have Tourette’s and they laugh because everyone knows what a light and breezy thing it is. Mundane tasks like cooking become side-splittingly funny when I can’t stop throwing the ingredients all over the place. Shouting out the letters I have in Scrabble always jazzes up a game, as does telling strangers that they’re fuckfaces and I hate them, even when they’re not really fuckfaces, and I do not really hate them. In these instances, I feel so blessed to have Tourette’s, because let’s face it, there really isn’t a more hilarious disability.

There’s also this other upside many people don’t really know about. Basically, I can say anything I want. I can use all the profanity in the world and people can’t get mad at me, because all I have to say is that was my Tourette’s, even when it wasn’t! This is awesome, and every day I make sure to throw in a couple of fake swearing tics, just because I love offending people.

I almost forgot to mention how awesome it is that my tics change almost constantly. One day, I’ve got blurry vision from the tics in my eyes, the next my voice is hoarse from all the shouting, and the next I can’t even walk from A to B. Tourette’s is so spontaneous and that’s how I like to be too: spur of the moment and wildly unpredictable. I just love not being able to tell which tic is going to hit me next. It makes life more interesting.

Of course, some tics do cause pain. After all, it is very painful to be repeatedly punching walls, and a little tiring to be trapped in a body which will won’t stop moving. Many people would see these things as downsides. However, I like to look on the bright side: I burn so many calories through my tics that I basically don’t have to go to the gym, and, although repeatedly punching walls might hurt, pain builds character.

After a couple shots of tequila, it’s normal to have a bit of difficultly walking. You might sway a little. Maybe straight lines are difficult. Or else, you might bump into something because your drunken brain has decided to be an inattentive buffoon.

The other week, though, I got the impression that my trouble walking had something less to do with tequila and something more to do with Tourette’s. I was walking to the bus stop after work, and every other step, my right knee kept buckling. Taking an Uber felt like giving up, and so I just carried on walking in my new weird way, tripping, stumbling, and stopping altogether every other step. At one point, I decided that if I couldn’t walk, maybe I could run. But I couldn’t. My legs just wouldn’t let me. On the bus, I stubbornly took my shaky legs up to the top deck, and when I alighted, my usual ten-minute walk home took me twice that.

Up until then, my Tourette’s didn’t seem to realise that my legs existed. My motor tics mainly manifested in my head, shoulders, arms, and torso. Below that, I was tic-free. But unfortunately, in the weeks that followed, the tics in my legs got worse and I found myself walking in increasingly bizarre ways. Sometimes, my legs would kick out in a way that apparently looked like a scene from Monty Python. Other times, I would kick walls, fridges and cupboards, the muscles in my calf would tense of their own accord, and at the end of the day, my legs would ache from the strain.

Tourette’s feels like many things, but in instances like this, it really does feel like you’re a puppet being controlled by a malicious five-year-old child. The child wants to embarrass you, make people stare at you, make you do things you really don’t want to do, and cause you harm. It’s frustrating. Frustrating not only because one week you can walk just fine and the next you can’t, but also because this facet of Tourette’s isn’t well known at all. Many tics are really funny. But when you can’t walk, it’s kind of hard to find the humour.